{"id":146,"date":"2016-08-12T07:24:49","date_gmt":"2016-08-12T15:24:49","guid":{"rendered":"https:\/\/siangandannie.com\/peregrinate\/?p=146"},"modified":"2025-02-22T18:33:00","modified_gmt":"2025-02-23T02:33:00","slug":"the-start-of-a-walk-to-remember","status":"publish","type":"post","link":"https:\/\/siangandannie.com\/peregrinate\/the-start-of-a-walk-to-remember\/","title":{"rendered":"The start of a walk to remember"},"content":{"rendered":"

List of updates:
\nhttps:\/\/siangandannie.com\/peregrinate\/atc3-sup-list\/<\/a>
\n<\/em><\/p>\n


\nHere begins the writing. With priority given to settling us into a good routine of care for her, it had been easy to postpone.\u00a0 Then I reminded myself that it’d be good for me to have an outlet.\u00a0 To clear my mind of scattered thoughts that may or may not matter at the moment.\u00a0 To brian-dump, so that I can keep clarity of mind in the present.\u00a0 To rattle off to you.\u00a0 And keep you updated of her; and selfishly, of me.
\nThank you, I appreciate you. \u00a0<\/em><\/p>\n

Two weeks have passed now, since my return to Seoul.\u00a0 Though it feels much longer.<\/p>\n

Annie completed her 10th session of radiation this past Thursday at Gangnam Severance Hospital.\u00a0 These treatments were to take care of the more immediate “oncological emergency” that reared it’s head, metastatic spinal cord compression (MSCC).<\/p>\n

She naps now.\u00a0 Her face serene and peaceful, mapping her name,\u00a0\u5b89.\u00a0 The grimaces from lying down and getting up though, remind me of how she’s never one to complain.\u00a0 The bone marrow suppression from radiation has caused her rbc\/wbc\/neutrophil counts to approach an anemic\/neutropenic level.<\/p>\n

The radiation area has been extensive, T3 thru T11.\u00a0 Though primarily focused on T4-6 where the tumor presses upon the spinal cord.\u00a0 The radiation oncologist noted that they rarely radiate such a large area of the spine in one go.\u00a0 The other areas would have to wait.\u00a0 Yes, other areas.\u00a0 At the base of skull, T1, cervical, lumbar.\u00a0 And that’s just the spine.\u00a0 I’ll omit listing the other bones for now.\u00a0\u00a0 The T1 area would be up next for treatment, as her fingers are tingling; but careful scheduling and calculation of dosage will need to be done.<\/p>\n

Now that the risk (hopefully) of potential immediate damage from MSCC is mitigated, the more immediate risks would be compression fractures.\u00a0 Because the lesions in the spine are extensive.<\/p>\n

On the bright side, the back\/radiating pain prior treatment has subsided.\u00a0 The doctor did caution that since the tumor was extensive around T4-6, the radiation has primarily been palliative.\u00a0 And since additional radiation to the same area should be avoided for now, other methods of treatment will have to take place soon.\u00a0 Else it’ll progress again, and the risk of MSCC occurs again.<\/p>\n

We’ve visited different doctors.\u00a0 It’s been interesting to observe them as they pull up her PET\/MRI imaging, even on second\/third consults.\u00a0 There’s an invariable pause, sometimes a slight purse of lips towards a corner, as they ponder how to start the day’s conversation.\u00a0 I wonder, if their internal processes are ever parallel mine for at least one instance, even with their experience. Which is to stare, process and resist the urge to swear; before taking a breath and proceeding.<\/p>\n

I don’t stare at her PET\/MRIs much anymore.\u00a0 I pull them up only when reviewing audio from a day’s consult, to be able to closely review the conversations with the doctors.<\/p>\n

The areas in the lymph nodes, endobronchial (lung) and possibly thyroid that showed up on the PET aren’t being actively addressed yet.\u00a0 Since the reliance will be on systemic treatments to prevent progression.\u00a0 The docs have mentioned that though the likelihood is low, we cannot yet eliminate the possibility of the primary cancer being different;\u00a0 that is, metastasis from the lung or thyroid, versus the breast.\u00a0 The focus is first getting a biopsy.<\/p>\n

A detailed liver MRI has confirmed what the PET had picked up.\u00a0 But the spot is “too deep” for it to be a good site for a biopsy.\u00a0 They are reviewing options for a possible bone biopsy.\u00a0 We’ll hear back this coming week, with a tentative bone biopsy scheduled for the next.\u00a0 Hopefully we hear of a go-ahead for the biopsy.\u00a0 There’s some tricky coordination as the biopsy will be at the second hospital we hope to move treatments over to.\u00a0 (The radiation treatment till date, and for T1, is at a different hospital)<\/p>\n

This will bring more clarity to the decision regarding the choice of Seoul or Seattle for initial treatments.<\/p>\n

We’re thankful for the spine doctor here in Seoul she saw for her back pain less than 3 weeks ago.\u00a0 He was curious enough to ask about medical history, then followed through with a CT, and then MRI to discover what we know now.\u00a0 Otherwise, we’d probably have found this out in a much more jarring manner. Via sudden progression towards paraplegia.\u00a0 Though I’ve tried to avoid doing so,\u00a0 I’ve asked myself the questions that are pointless-to-ask-at-this-time in the quiet of the night.\u00a0 How did all this evolve so quickly since her last check up?\u00a0 Were check ups effective? Why didn’t the breast reconstruction doc she saw back home in Apr investigate more, when she went to him regarding radial pain at the same level where the more serious spinal compression is?\u00a0 Why dismiss it as muscle strain?\u00a0 Especially since they clearly knew her history?\u00a0 Why didn’t the radiologist stare a little at the obvious spinal canal narrowing that can be seen in the survey set on the breast level MRIs taken then?\u00a0 Because his job at the moment was to look for other things?\u00a0 No one’s infallible, but this gives uncertainty as to which facility we should we seek treatment at if we head back to Seattle.<\/p>\n

Digressing, the idea of medical tourism for full checkups at the end of\u00a0 vacations seem a good thing.\u00a0 Full diagnostics\/PET\/etc scans are incredibly affordable in many places.\u00a0 I’m no actuary, but the wandering mind thinks there’s probably a financial incentive for insurers to detect early cancers fast.\u00a0 However, there’s no incentive in the system to detect metastasis early is there?\u00a0 Since it’ll cost more for treatments till EOL (End-Of-Life)?\u00a0 Topic for another day, another time.\u00a0 Not now.<\/p>\n

It is easy to yearn for a simple narrative.\u00a0 And one that is pretty.\u00a0 Like pink ribbons.\u00a0 Like the tidy stories given at one’s first introduction into the breast cancer arena.\u00a0 “Detect early, do X\/Y\/Z, feel good for 5\/10 years and you’re cured”.<\/p>\n

Alas, that is not our reality.\u00a0 Reality is nuanced.\u00a0\u00a0 In early detection of breast cancer, few, if any, talk of the more complex narratives that will unfold down the road.\u00a0\u00a0 Even less so, will anyone say a harsher sounding yet simple narrative to the newcomer,\u00a0 “Your breast cancer won’t kill you.\u00a0\u00a0 It is the metastasis one day that will take you.”<\/p>\n

I digress.\u00a0 Back to the present.\u00a0 Back to my beloved.<\/p>\n

She will be getting fitted with a body\/spinal brace by the orthopedic department this coming week.\u00a0 To help with possible spinal instability.\u00a0 If it looks too stormtrooper-ish, I’m going to put out a call for stickers\/laminates, so you can help make it look more badass.<\/p>\n

We like the oncologist we’ve met with at this second hospital, Samsung Medical.\u00a0 We will see her primarily if we stay on for initial treatments. Though she was surprised to see Annie walking, instead of being wheeled in on a wheelchair or bed. She came across methodical, and willing to explain,\u00a0 even at our second consult.\u00a0 Plus she’s willing to be a straight shooter;\u00a0 we asked her to be, and she was.\u00a0 Her treatment goals also appeal to us.\u00a0 That would also be a topic for another time, as that delves into the deeper questions, those regarding personal choices that straddle the fine line of prolonging life versus quality of life.<\/p>\n

The days for now are about settling into a routine.\u00a0 Not dissimilar to the early chemo days a dozen years ago.\u00a0 For her: wake, eat, drink fluids, nap, eat, smile at me.\u00a0 For me: wake, cook, read, organize, cook, smile at her, sanitize\/clean.<\/p>\n

Summer in Seoul is a reminder how much more often one needs to clean shower areas, toilets, sinks, etc in warm and humid environments.<\/p>\n

I’ve let care of myself lapse.\u00a0 I’ve lost weight and muscle incredibly fast.\u00a0 Need to get in some exercise this week and stay sharp; and to remind myself that a more sustained output is required this time round.\u00a0 And unlike the first time round, the inner currents of youthful invincibility are now piddly puddles.\u00a0 Remind me please.<\/p>\n

We’re very thankful for the support, the actionable information, medical research, listening ears, practical support, laughter; and the knowledge that you are available to us to call upon for help.<\/p>\n

For normalcy, we watch the Olympics, and be silly.<\/p>\n

The ebb and flow of emotions occur of course.\u00a0 There’s laughter, smiles, and also the moments.\u00a0\u00a0 In some of those moments, we hug, dance, and have a good cry.\u00a0 Characteristic of her, she’s more worried about worrying others, than about herself.\u00a0 Do feel free to infuse her periodically with joy, laughter and anecdotes of your lives.\u00a0 She loves it.\u00a0 She got really happy when she quickly solved a riddle a friend sent.<\/p>\n

We’re looking forward to getting through whatever the first phase of systemic treatments await, and getting to the first segment “a new normal”.\u00a0 I wish for these segments to not only be pain free for her, but that they also afford her the ability to be happy, tick off boxes on the bucket list, and have fun times with those around her.\u00a0 And I really wish for her not to have to experience a vertebrae fracture ever, and if not ever, at least not soon.<\/p>\n

Though we do not know how long this walk will be this time, there is no avoiding where the final segment ends.\u00a0 But we can choose how we’ll walk this path.<\/p>\n

Thank you for walking with us.\u00a0 Be it for a portion of, or for the whole hike.<\/p>\n

I do not remember much of the path taken a dozen years ago the first time round, just fragments of memory.\u00a0 This time however, it will be a walk to remember.<\/p>\n","protected":false},"excerpt":{"rendered":"

List of updates: https:\/\/siangandannie.com\/peregrinate\/atc3-sup-list\/ Here begins the writing. With priority given to settling us into a good routine of care for her, it had been easy to postpone.\u00a0 Then I reminded myself that it’d be good for me to have an outlet.\u00a0 To clear my mind of scattered thoughts that may or may not matter […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"pgc_sgb_lightbox_settings":""},"categories":[1],"tags":[6,8],"_links":{"self":[{"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/posts\/146"}],"collection":[{"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/comments?post=146"}],"version-history":[{"count":3,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/posts\/146\/revisions"}],"predecessor-version":[{"id":1324,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/posts\/146\/revisions\/1324"}],"wp:attachment":[{"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/media?parent=146"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/categories?post=146"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/siangandannie.com\/peregrinate\/wp-json\/wp\/v2\/tags?post=146"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}